Celiac or non-celiac or neither? Confused!

[Vicky99]

I’ve got myself thoroughly confused! So grateful if anyone can help with my questions.

Background: I had a celiac blood test early this year – negative, but I don’t know exactly which test(s) the doctor did or what the numbers were. At the time celiac wasn’t suspected, I was just having a range of tests for something unrelated. In the middle of April I cut out wheat as I had been having tummy pain for some time, feeling slightly sick and having nasty bowel movements. I didn’t expect it to work but after a week my bowel movements were pretty normal and the pain was gone. To my astonishment, after around 3 weeks I had nine days of feeling amazing – gone were the exhaustion, brain fog and irritability which had plagued me for a whole year. It wasn’t until I felt normal again that I realised how bad I had been. Even my vision improved! Then on the 9^th day I ate cake made from rye, thinking I was probably just sensitive to wheat, and the next day I was back to feeling terrible. Since then I’ve had another 10 day run of feeling great, so it wasn’t a one-off.

So my questions:

1. Does anyone have any advice on whether this sounds more like celiac or non-celiac gluten intolerance? Is there necessarily a difference in symptoms? The only thing that makes me think I might need to investigate celiac further is that I had a rare pregnancy complication just over a year ago which apparently makes women more prone to autoimmune conditions.

2. At first I wasn’t careful about avoiding all gluten, and still had non-gluten-free oatcakes, gravy with gluten etc. Is it normal to feel much better at first even without total exclusion?

3. Is it normal to get much more sensitive as the weeks pass? Yesterday I handled non-gluten-free cake, then handled gluten-free cake without washing. Today I have felt all those familiar things – total exhaustion and brain fog, plus tummy ache. It seems so unlikely such a tiny amount could do anything...?

4. After around a month of being almost gluten-free my bowel movements became loose again, not as bad as before but not right, and they haven’t been right since. I’m wondering if this is lactose intolerance. Does anyone know whether secondary lactose intolerance can happen with non-celiac gluten sensitivity or is it only a celiac thing?

5. A few hours after eating the rye cake I felt a very strange sense of elation/euphoria. I knew at the time it wasn’t normal. I felt so high I didn’t sleep well and woke up the next day feeling awful. Does anyone else get this? I’ve had it once or twice since then (to a lesser degree) after having small amounts of gluten.

6. Ever since cutting out wheat I’ve been lightheaded almost every time I get up from lying or sitting. Can anyone shed any light on that?

Sorry about the super long post. I’d love to know whether anyone can relate to this or whether I should assume it’s all just my fevered imagination and I don’t have gluten intolerance at all!

[Bree J]

I can't speak on all of your points, but YES, the longer you go without gluten, the more sensitive you become to it. When I first started cutting out wheat, I could usually handle a bite of a breadstick at dinner. Now it hits me like a truck and my insides are ruined for days! I don't get stomach cramps from sharing a toaster with my family, but I'm trying to be more careful about that now because of I do have Celiac (my blood test was just "negative" too), it could be hurting my body in other ways that I can't necessarily feel right away.

Also, non-celiac gluten sensitivity and celiac disease have almost identical side effects. It's just that celiac can do more long-term, behind the scenes damage. Both suck though! And should be approached with the same amount of caution, in my opinion. I tell waiters it's celiac so they're careful (seems to be only word that will make them actually care).

[cyclinglady]

There are over 200 symptoms attributed to celiac disease. The problem is that they often overlap with other illnesses.  The only way to know for sure is to get tested after completing a gluten challenge (if you are gluten free already).  Know that some celiacs are seronegative.  It is on of the many reasons an endoscopy is required to complete a celiac disease diagnosis.  

In any case, you need to obtain all your medical records (forever!)  Maybe you did not have the entire celiac panel.  If my GI had not ordered the entire panel, my diagnosis would have never been caught.  

[Vicky99]

On 6/13/2018 at 10:28 PM, Bree J said:

I can't speak on all of your points, but YES, the longer you go without gluten, the more sensitive you become to it. When I first started cutting out wheat, I could usually handle a bite of a breadstick at dinner. Now it hits me like a truck and my insides are ruined for days! I don't get stomach cramps from sharing a toaster with my family, but I'm trying to be more careful about that now because of I do have Celiac (my blood test was just "negative" too), it could be hurting my body in other ways that I can't necessarily feel right away.

Also, non-celiac gluten sensitivity and celiac disease have almost identical side effects. It's just that celiac can do more long-term, behind the scenes damage. Both suck though! And should be approached with the same amount of caution, in my opinion. I tell waiters it's celiac so they're careful (seems to be only word that will make them actually care).

Thanks Bree, that's all really interesting. It's weird that celiac disease and gluten sensitivity are so similar. Without knowing whether I have celiac disease I feel a bit silly claiming to be so sensitive to gluten that I can't even have a crumb, but that's what it's starting to look like - and if it makes me feel well then it's just what I'll have to do.

[Vicky99]

On 6/14/2018 at 5:37 AM, cyclinglady said:

There are over 200 symptoms attributed to celiac disease. The problem is that they often overlap with other illnesses.  The only way to know for sure is to get tested after completing a gluten challenge (if you are gluten free already).  Know that some celiacs are seronegative.  It is on of the many reasons an endoscopy is required to complete a celiac disease diagnosis.  

In any case, you need to obtain all your medical records (forever!)  Maybe you did not have the entire celiac panel.  If my GI had not ordered the entire panel, my diagnosis would have never been caught.  

Thank you cyclinglady. You're right, I need to see what tests they did. If I'd suspected celiac I wouldn't have stopped eating gluten, so I regret it slightly... but at the same time I feel so much better and can't see myself doing a gluten challenge for a long time. They need to invent a test which can be done while gluten free!